don't forget the t.v. show...extreme makeover

[Mother's Heart]

extreme makeover's on now. the one with the 8 member family....5 autistic children among them.

[tgrimes]

Did you see it? That was so great, that floor plan is so good for them and the alarm on the doors is going to help.
I was so surprised when they showed the family a broadcast of the house being demolished no one cried or freaked out... I guess they were well prepared to see it.

[Mother's Heart]

I saw bits and pieces, I think I got most of it recorded. just too much going on here for me to settle in and watch it. But I saw enough to make me cry. ;) and enough to think the same thing you did: wow, there's a lot less freaking out over all the dramatic changes than I would've expected.

gotta run....deliver sleepover supplies to church and I'm later than I said I'd be. hasta la vista!

[mcewen]

thanks for the reminder - I'd better go and attack the telly as bed time can be a little fraught around this neck of the woods.
Cheers
http://whitterer-autism.blogspot.com

[milivica]

ACK i FORGOT EVEN WITH THIS REMINDER!!!

[Mother's Heart]

I forgot too. a friend from my small group bible study called me when it came on and asked if I might be interested in it. :) I couldn't find the phone (just came in out of 3 hour walk in the snow and my pants pocket was singing and glowing in the laundry room. Good thing she called that....or I might've had a long job tracking down that phone...and it might've been might wet and clean by then. ;)

[LIZARD]

I saw it, and it really moved me. I have to wonder, though...once you get a couple of kids dx'ed, wouldn't it occur to you that your kids have a higher than normal chance of more being affected and consider stopping? I'm sorry if that sounds judgmental; it just struck me as strange. My DH also pointed out that the husband seemed to be rather obviously affected, too.

The other thing I wondered about--and continue to observe in others I see and meet--is that there seem to be a lot of severely-affected and very mildly-affected kids out there, but although I don't think I'll ever find Drew's clone, no one seems to be anything like him. :confused: Academically, he's slowly catching up, but in terms of verbal ability, although he is improving slowly, he seems to be much further behind than in other areas of development. I know communication deficit is an autism hallmark, but it makes me crazy that I can't get an answer to "What does that (beating his face with his pillow) feel like?" after all this time. Sigh...:( :o I saw that this family appeared to have a couple of very high-functioning kids and a couple of much lower-functioning kids, but no one in-between (?). Anyone else see that, or was it just me?


LIZARD :)

[Mother's Heart]

I wonder if we don't see the middle-range kids because we just don't 'see' them. Perhaps they don't stand out in the same way the others do, with more behavioural extremes? just a thought, but then, you have a practiced eye at seeing drew's traits and have been on the alert, so to speak, for similarities in other kids. I dunno.

I had a totally unique (for me) experience yesterday. I teach 4-5 yr old sunday school class. At the beginning my students and the preschoolers join the gradeschool kids for a time of singing. As I led my group across the hallway to that room a preschool teacher was bringing her class and leading a small boy....a young two year old perhaps. She was smiling big, as usual,and as he went ahead into the room she says to me, He's a boy! name x,. He had fantastic shoulder length hair with just bit of curl and I guess that's why she told me that? Then she told me he has Autism...but very very mild. (I guess she thinks donovan is severe) Anyway, I followed in and stood behind while they did the activity songs. I was overwhelmed. It was a total flashback to twelve years ago for me. This child bore a striking resemblance to my son at that age in appearance (probably mostly the long hair) but also in the way he moved/stood and looked out at the world. You know. Btw: He was so cute!

He did try to imitate some of the actions to the songs...okay, just the part where they walked in place...and I don't remember Donovan doing that much without total physical manipulation. And perhaps he actively observed the people a little more in the process. sigh..otherwise, he was MY kid there in front of me. VERY VERY weird. I was overwhelmed.
I've never seen any other asd kid who truly seemed just like my ds.

When he was young I made up an analogy to describe the variety in autistic individuals to myself. I said Autism being a spectrum disorder, is like a smorgasboard with a wide variety of offerings on the table. And it's like each kid 'picks' out which traits they will exhibit and how strongly they will. so maybe my kid picks number 1,3,4,17, 38, 42, 43, 58, and 72 to be the things he does and the challenges he struggles with. While another kid might pick out some of the same traits, not others, and add some of his own to himself. (Yeah, I know the kid doesn't pick...but you get the picture.)
so, my kid might have major tactile defensiveness and be non-verbal, might spin in circles and never make eye contact, might self-injure, might have seizures, and then your kid might have major tactile and sound sensitivity but be verbal and never spin, never make eye contact but also might be compulsively tied to a rigid routine etc. etc.

so....just like the bunches of people eating at a swedish smorgasbord restaurant might all have a different combination and amounts of swedish food on their plate, the bunches of folks with autism all are eating at the 'autism restaurant' with a different combination of autism traits in their personhood. And since their individual person-ness figures into who they are, along with their autism, no two lunches look alike.

and if the autist is chinese then maybe they eat with chopsticks! ;) :D

I just can't believe that kid was so much like Donovan. Freak me out!

[Mother's Heart]

I see a lot of families with one 'very autistic' kid, one with ADHD, one with ocd or tourettes or other 'shadow syndromes'. or a family with a moderate kid and a very very mild one.

I can so relate to your eagerness to get the lad to describe to you why he does something and how it feels. I personally can't handle whackign my head on the concrete to try find what it feels like and even if I could I doubt it would feel the same to me as it does to him.

Since the words have come into our world I've gotten a few explanations, but they aren't always as detailed as I would like. I've got a LONG list of things to ask him about. :D You wanna know what the most terrible awful horridible thing is? I was flummoxed for half a dozen years about why he totally freaked out, cried, screamed, threw things, hit his head, hit me, whenever we were driving in the car and turned left. I was so concerned about it...he seemed to be in pain and so miserable. I mean, we had mri's and went to many different drs and tried a bunch of different things in the car. no answers. mostly I learned to get places by turning right alot, telling him before we turned, and making funny noises at the same time we turned...that worked best, like contradictory behaviour tactics. I think the sounds I made damped whatever was bothering him when we turned.

I asked him about it last month. Can you tell me what was wrong? why you did that? his most incredibly disappointing response?: "I dont remember". siiiiiiiigh. I shoulda asked earlier. The behaviour has faded out and he doesn't really do that any more. I don't know why it started. and I don't know why it stopped.

[tgrimes]

OMG - Theo did that same thing for a of month - insisting we had to make a right turn at this one intersection on the way to school, and it was out of the way, we had to go up and turn around to get to this spot. He could talk then too, and just coudn't explain what was the deal about the intersection at the time. (And he could't hear himself reason anyway for his screaming) After a month he started making the sound the tire made when we turned right.
I gotta be honest, I was kinda floored... I said "YOU MADE ME DO ALL THAT BEFORE SCHOOL JUST TO HEAR 'WHOOSH!'?"
And he said yeah, that was basically it, and then he started doing it at every right turn, and then stopped caring about it soon after that.

[Mother's Heart]

wow. it was to achieve an event instead of to avoid it. Hmm. Donovan's didn't seem manipulative. It seemed reactive but....as you know it's alway a possibility. When I turned my steering wheel the base of the column rubbed on the dashboard where it moved against it. I thought for awhile..and still kind of do, that the obnoxious sound was what freaked him out.

I mean, I looked at where we were when it happened to see if he just didn't want to go there, tried different routes to see if it was the route, or the 'not the right route' thing. I tried not turning the indicators on, tried different seats to see if the seat belt was hurting him, tried radio music (that actually helps a tiny bit now, but didn't then) tried music in his ears, tried weights on the lap. Ear fluid checks and mri's. I thought perhaps he was carsick. etc, etc, etc. You know, there are a lot of possibilities out there, and not many certainties---with each thing our kids struggle with. We do a lot of observing, analysing, guessing and trial and error. Sometimes it helps. :)

We had a little boy on my son's bus whom we'd known a long time. He was very much like donovan for a long time, then at 5 yrs when they both started ABA this boy immediately started talking and progressing. One of his struggles however was that he had to go the same route. My son was not healthy and missed more school than he attended. Even so....the driver often had to come by our house every morning anyway for the other kid's need to run the route. They didn't alway sdo that, of course but sometimes he really needed it and the driver understood.
Same kid also freaked out one day when Donovan got on the bus. Started crying and saying "da-da". (short 'a') He was really stressed out. I got on and knelt down by him and asked him what was wrong. At first the driver thought he was saying Daddy....then he pointed at donovan...we thought he was saying 'donovan'. then I listened again and realized he was saying GLASSES! da-da. Donovan wears glasses but I had the school put them on him for awhile instead of him wearing them on the bus so they would actually GET to school and not be gone. All I had to do was console the friend and explain why he wasn't wearing them. Show him they were in the backpack. He wasn't thrilled we didn't put them on right then....but manageable. Bless his little heart.
($300 a day is expensive 'school supplies')

[rbear4]

so, my kid might have major tactile defensiveness and be non-verbal, might spin in circles and never make eye contact, might self-injure, might have seizures, and then your kid might have major tactile and sound sensitivity but be verbal and never spin, never make eye contact but also might be compulsively tied to a rigid routine etc. etc.


WOW! Good analogy on that whole lunch thing. This is exactly our problem and where we are at. Because my ds is highly verbal most folks automatically assume he is less affected. However, his rigid routines, anxiety, sensory issues, etc are severely debilitating. He also stims, self-injures (not frequently thankfully), has poor eye-contact, and has tactile and sound sensitivities. But that darn highly verbal thing wins out every time.

I even signed him up for special olympics swimming. One of the first comments I got naturally was "he is so high functioning". I felt like saying "wait". And sure enough by the second lesson he was having trouble, a lot. Not listening, stimming, totally overstimulated and near meltdown. Then they decided to try on bathing suits for the team suits. Well he would have no part of that. It was a new suit and he doesn't do change at all, ever, without a lot of prep. It is also a new kind of suit (speedo) and I can guarantee between the newness and sensory issues if they make him try to wear a speedo for a competition he will never compete.

But all the kids who were less verbal were trying it on without a problem. But the oppinion was Mike was just being oppositional. Since he is highly verbal more is expected of him and often he can't do it.

Same goes with every respite person we have ever had. They start off thinking "This is EASY" because Mike is very verbal and with the number of modifications and supports I have at home he does well. He can fake it for the first few respite sessions but sure enough before long there are huge problems because the respite workers always think 'but he is so high functioning!".

Yes my "high functioning" 11 yo autistic son hit and was yelling at some 4 yo at the park with the respite guy on Tuesday because the kid kept getting in his space. AND he doesn't understand why he was taken home from the park and obsessed on it. Yep, that is high functioning.

LOL, you got me on one of my tirades, sorry!

[Mother's Heart]

renee,
Exactly.
I understand.

[peglem]

Level of functioning is rather relative. Just be aware, that often, for nonverbal kids, it is assumed they are extremely mentally retarded and it is often difficult to get people to have any expectation of them.

[rbear4]

Level of functioning is rather relative. Just be aware, that often, for nonverbal kids, it is assumed they are extremely mentally retarded and it is often difficult to get people to have any expectation of them.


I totally agree. Funny how much is attributed to only one aspect of autism, whether a person can communicate verbally or not or how well they communicate verbally. I have had the pleasure of knowing a number of very able non-verbal children with autism.